suggestions please? anyone?

hi everyone, i know everyone responds differently on meds, but i am going to ask anyway. i currently take sinemet and mirapex every 2 hrs and it doesn't seem to work for me very well. i mention to my doc all the time n all he ever does for me is increase the frequency of my doses (which alot of times makes me very dizzy (walk like a drunk) and makes side affects worse. i had also heard if you take too many doses of sinemet in 1 day it could make your symptoms of pd worse, which i feel that way but alot of times unsure if meds or disease itself that make me feel that way. he did have me try comtan n stalevo before n didn't work for me either for one reason or another. anyway after reading some of these posts i thought about asking my doc if i could switch to madopar and the neupro patch. and possibly one tab of a CR (controlled release) to help me to get thru nite bec i cant move around in bed and i always have to get up at least once in middle of nite to use restroom.... that so much fun NOT it is always a challenge and i have to grab ahold of something to pull myself up just to get out of bed. any suggestions please? everything i do anymore is like a chore, everyone's input would be appreciated, thank you!

20 Replies

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  • Sorry I can't help you. I too am on Sinemet and Mirapex. Sinemet every 3 1/2 hours and Mirapex 2x per day. Good luck

  • I take1.5 cl-dopa evry 3 hrs and just started neupro. It takes 6 weeks to ramp up.

  • Be an empowered patient.

    Absolutely ask your doctor about other treatment options - different Rx combos - if you are dissatisfied with the current treatment results. Of course, there may be reasons why you can not use certain Rxs, find out why, then move forward.

    Doctor-Patient relationship must be one of give and take in order for the patient to receive the most benefit.

    The Doctor is not with you 24/7.

    The Doctor requires your input / your detailed notes to assess what the best treatment is for you as an individual.

    Carry on strong.

  • I agree with you.

  • I take Mirapex 3 times daily and I am thankful that it works.

  • you didn't say how long ago you were diagnosed---------but I am thinking every 2 hrs is adversely affecting you & could be why you feel the way you do. I was diagnosed 6 1/2 yrs ago---initially took mirapex later changed to requip 3x/day but it caused problems with passing out when driving. I was changed to requip XL at bedtime--currently 8 mg. Within the last year I was put on sinemet 25/100---take 2 pills at least 3x/day and recently added sinemet CR 50/200 to the requip XL at bedtime. I too have the same issues when I have to get up during nite but once I am up for the day & get moving it gets better. Wish you the best & hope this helped.

  • i was diagnosed in jan 2009.

  • thank you everyone for all your reply's! i will be compiling a list to discuss with my doc at my next appt. the strength i take is carb;/levo 25-100 and the mirapax is .25 sound about right? i have tried not to take as frequent (every 2 hrs), tried to stretch out as long as i can and sometimes ( not very often) i am good for 3-4 hrs between a dose and then most times my body let me know its time for my next dose (close to the 2 hr mark) and sometimes it doesn't even wrk for those 2 hrs and others i feel as if i could take take again my next dose an hr later. there are also times it's been 2 hrs and time for next dose, but i feel fine and i asked my doc if i should take dose anyway or wait tll my body needs it and he says i should take bec it is so important to take like clock work to keep in system. when i do sometimes i feel worse (more stiffness, more balance issues) before start feeling better... almost as if i'm getting too much dopamine.... is that possible? doc says it's prob due to my meds wearing off before my next dose kicked in. idk anymore what my body is supposed to feel like anymore.... very frustrating maybe someday they will find the right combo/dosing for me! i'm considering making a trip to mayo clinic next yr to see if they can help me better with my treatments so i can at least have a better quality of life and i hear they are pretty awesome! anyone ever been for their condition?

  • I think one of the biggest frustrations with this darn disease is finding the right combination of medicine that will work for you as everyone is different. My husband is on 1 mg. Mirapex 3x day and 1 1/2 Carb/Levo 25/100 4x day and sometimes it seems to work and other times it doesn't. He also has PD related dementia which I feel the meds sometimes makes that worse. Another issue is trying to get in to see our Movement Disorder Specialist as they are always booked solid and you have to wait for a couple of months to get an appt. which can be frustrating when you are having problems with your meds. Seems like the issues are never ending. Good luck!

  • yea, that is a big frustration! sometimes the meds work great and other times not so good if at all. it would so nice just to be able and have smooth consistent days! good luck to you also!

  • have you tried Sinemet slow release at night - that seems to help me. Also, you may have too much mirapex which can cause some symptoms. After some trial and error, we (my physician and I) hit upon 1.5 tablets of sinemet 25-100 every 3 hours from 6 AM through 6 PM. I take Mirapex .25 3-4 of those times (any more starts to wake me up at night) and t2 tablets of the Sinemet SR 50/200. I sleep least poorly (though still not well due to rigidity, vivd dreams and the need to go to the bathroom)with this routine and have the least symptoms. It did take a fair amount of communication and varying the dosages/schedules to arrive at this over a couple of months. Also, the more I do cardio exercise, the better the drugs seem to work. Good luck!

  • i'm going to talk to my doc at next appt about the slow release sinemet at night, but why do you only take at night , could you take during the day in place of the regular sinenet? i think i am on too much miapax i'm going to talk to my doc about that as well. thanks.

  • HI TM, sorry to ask this, but are you seeing a Parkinson's specialist? Reason I ask is that i'm seeing one of the top research neuro's on PD, and he told me early on stay UNDER medicated. I'm always surprised when people are on an agonist AND sinemet, because I thought the purpose of an agonist (mirapex) was to delay having to take the sinemet. Agonists made me deathly ill so I was happy to get off them. But we're all different. Good luck.

  • yes, i do see a neurologist who specializes in movement disorders, like pd my fam doc 1st referred me to a reg neurologist and he put on sinemet right of the bat and added requip a few months later to help control the dyskinisia i was experiencing. as time went on he referred to the doc i see now bec i was a considered a complicated case... never could get the right combo/doses right for me. somewhere along i was switched from requip to mirapex...had something to do with insurance. while under his care i sens several other neurologist bec i wasn't happy with treatment and wasn't even convinced that is what i had and neither was my doc...not 100% sure. everytime i would see him he would make changes to meds which always made me feel bad for a few days until my body adj. my meds wear off so quick that is why i am up to taking every 2 hrs and i apparently have a bad form of pd that progresses quickly and is more severe. i really can't walk, or move (real slow), real stiff and poor balance when my meds aren't wrking for me, but only seem to wrk 1/2 the time. some my hubby has to assist witth things like getting dressed. my doc even ran another scan to check for damage on my brain from being poisioned bec around the same time my symptoms started apperaing (didn't know at the time), but me n hubby were being slowly poisioned by carbon monoxide due to a faulty furnace. when we got real sick form it ended up in hospital with oxygen on our face for 1/2 the day. we both had high levels.... we were close to death.... freaky i know i get chills every time i talk about it. i often wonder if the mirapax makes me feel so bad bec sometime i only take sinemet and i feel fine and when i take mirapax with sinement alot of the time i do feel worse almost as if my pd symptoms get worse ..... but doesn't affect me like that all the time. i just keep getting worse at this point not sure if it;s the meds or the disease itself. i still cnat help but wonder if the co poisioning had something to do with all this bec it cna cause parkiinson like symptoms. you said you see one of the top researchers... what state is that? i have of ? fro my doc my appt coming up0 end of month. still if nothing gets regulated i might have to make a trip to mayo clinic and see if they can offer better treatment for me. thank you for your reply.

  • i have found that physical therapy has helped with the poor balance and rigidity and a chiropracter has done alot more for the rigidity. I also do multiple sessions of stretching and rolling out some of my leg muscles.

    Also - it may be possible you do not have PD per say but another form of a Parkinsonism that is not responsive to the PD meds.

  • i seen numerous neurologists and they all pretty much agreed that i had pd, plus they ruled everything else out and also in jan i had a new scan done (just was approved by fda last yr) it is called a dat scan and supposed to confirm parkinsons.

  • i was also in physical therapy for about 2 months.

  • That is quite a story tmhiggs. I am surprised to read about your dyskinesia so soon after taking sinemet. Pat commented about agonists and sinemet together, it is common practice. The majority of people i know are on both. As she says often people are started on an agonist alone and one reason is to delay starting l dopa (sinemet or madopar) medication. This is not the appraoch of your doctor it seems.

    After a while they add in sinemet (or madopar) . In this case the agonist helps to smooth out the effect of the L Dopa drug (sinimet or madopar) and keep down the overall amount of L Dopa needed.

    Agonists are hard to tolerate (and so have to be introduced very slowly). Many people need to take an anti nausea pill for a few days or weeks while they adjust. One other major problem is episodes of low blood pressure which are not nice. I found extra water helped this. This may be what you are experiencing.

    Wow, what you have gone through already! Do so hope you get sorted with advice and care from the mayo clinic.

  • yea, one of the neurologist i seen took me off sinemet (cold turkey) i thought you couldn't just stop but he did me, anyway wanted me to take a high dose of agonist (either mirapax or requip) and that made me so deathly sick... was dizzy, light headed and was very nausea.... ended up running out the back door of he dental office where i worked at the time and got sick.... was sick for a couple of days from it. after that i started back up my reg regimen. i think after that i quit going to different dr.s looking for answers. but now 3 yrs later i'm still looking ..... better treatment for my individual self.... mayo clinic may be my last stop and hope they can figure something else out!

  • I do not know about your meds. I recommend you look up Robert Rodgers on YouTube and also Dr Lonnie Herman on YouTube and Facebook. Robert has a website which addresses causes and also has written books which are very helpful to me regarding the road to recovery.

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